Malaysia will propose an ASEAN declaration on rare diseases to improve diagnosis and treatment access through regional cooperation and a shared database.
PUTRAJAYA: Malaysia will spearhead a regional initiative to tackle rare diseases by proposing an ASEAN declaration and establishing a shared database to accelerate diagnosis and improve treatment access.
Health Minister Datuk Seri Dzulkefly Ahmad announced the plan, stating it would be tabled at the upcoming ASEAN Health Ministers Meeting to coordinate joint action among member states.
He emphasised the critical need for collaboration due to the prohibitively high costs of specialised medicines and medical equipment required for these conditions.
“This initiative allows ASEAN countries to collaborate on procurement of medicines and costly medical equipment, ensuring more efficient and equitable access to treatment for patients,” he said at a press conference following the launch of the National Health and Morbidity Survey 2025 findings.
The minister added that Malaysia will develop a national rare disease registry database to facilitate data sharing with ASEAN partners and the wider international community.
He explained that a shared database could dramatically shorten diagnosis times, which for some rare conditions can currently take up to a decade, thereby improving treatment outcomes.
Dzulkefly also highlighted the importance of supporting caregivers, noting that the burden often extends beyond patients to their families.
He stated that support initiatives, including strengthening care systems and providing moral support, would continue to be enhanced as part of a comprehensive approach.
This regional push follows the launch of Malaysia’s own National Policy on Rare Diseases earlier this year, aimed at creating a more structured and sustainable healthcare ecosystem for such conditions.
The minister revealed that approximately 12,000 patients, covering nearly 500 different types of rare diseases, are currently receiving treatment at government hospitals across the country.
